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Passing this on to our children


#1

I’m a 35 year old woman with no children, and time is running out if I want them. I’ve had this condition for nearly 10 years. Back when it started I wasn’t interested in having children. But if I want them, I need to get going. But migraine is hereditary, and I guess MAV is too? I wouldn’t wish this condition on my worst enemy, let alone a potential human being that I would be responsible for creating. Does anyone have any thoughts on this? Any experience with your own children? Any advice?


#2

Amanda, welcome to the board. That’s a tough one!

That’s extremely thoughtful and considerate of you but I’d make a few points:

  • there’s no scientific proof MAV is hereditary that I’m aware of (if anyone has seen such a study, please share!)
  • we don’t know the root cause(s) of MAV, you may have injured yourself for all you know, or been exposed to an unknown infection. Your child is unlikely to be subjected to either of those events given how rare MAV is? Of course there’s a possibility it’s idiopathic and some cases might be genetic … who knows? And in any case why wouldn’t your child take after your partner in this part of their anatomy? Perhaps one day they will have a gene test for this? …
  • there is no scientific proof MAV is even caused by migraine, it could be that migraine is an outcome for all we know … the condition is defined by its symptoms, not by its root cause (because we don’t know what that is). This is an area of controversy to say the least but probably moot wrt to your concern.

On that basis and for your mental wellbeing in general I would push ahead with your life goals in any case, so long as you have MAV under some good level of control with whatever regime is working for you.

It goes without saying that if you don’t have MAV under control yet, I would focus on that first and not add unnecessary stress & burden to your life until you have.

I’m sure other members will provide additional perspectives …


#3

Nobody in my family has had MAV as far as I know. Just a bit of meneires, but nothing that couldn’t be treated and resolved pretty well with lifestyle and diet. I’m still not sure how I got MAV, but pretty sure that lifestyle was the biggest factor. I pushed myself hard for a long time and I broke.

Its good that you are thinking about this, but the cause(s) of MAV is not really known and I would just go forward with life. You can minimize the chance your children will get it by showing them how to slow down in life and live more balanced and healthy. Probably that is worth more than genetics. That’s something that I intend to do with my family and something that I might not have done had I not got MAV.


#4

A tough one indeed.

These days we know so much and so little. We have to make a conscious decision to ‘start a family’. Not many years ago children were the inevitable result of a carnal relationship in those days almost always marriage. Are we any farther forward really.

Like lots of other conditions and I suspect linked with other related conditions, migraine runs in families but people need to have a genetic pre-disposition to it. There are far more serious conditions one could pass to a child. Then some genetic mutation could give your child a condition which has never previously been found to occur in your family. Alternatively your partner’s genes and genetic predispositions may mean your child never does inherit your migraine gene. Would your child inherit it. Nobody knows. We know so much and so little.

If you can look at the proposal totally dispassionately you could check what percentage of people in your family have migraine/MAV. Give you some indication of probability maybe. I know I’m the first and only in my family. I’ve had MAV for 15 years and since it became chronic nearly 4 years ago it’s been truly miserable alot of the time. Do I wish I’d never been born? Of course not.

If you feel you want a child, go ahead, before it’s too late. Don’t deprive yourself because of a ‘What if’. Nobody’s proved MAV’s hereditary. And besides, worse case scenario, science moves on all the time. A cure might appear any time.


#5

Thanks all for your perspectives on this. You’re making me think about it in ways I haven’t before, so hugely appreciated.

I don’t know anyone else in my family who has it, but wonder if that’s because we don’t talk about it or don’t know what it is. I was told for years by doctors that it was all in my head (so was too ashamed to tell anyone), until finally I was diagnosed with MAV. And even that diagnosis may be wrong, it just fits better with what I’m experiencing, so I’ll take it. But it could be it’s in my family and we just don’t know. Or it could be entirely unrelated to genetics. I’m just struggling with the thought of potentially passing it to someone else.

As for whether I have my MAV under control, I don’t know. I don’t take any medication after many failed attempts on various drugs. For 10 years I’ve continued to work full time, and tried to live my life in line with my values rather than at the mercy of this problem. It’s not easy though, as I’m sure we all know. Getting through each day is a challenge. And I have the odd meltdown where I don’t believe I can keep going. So adding to that a baby is also a tough decision!

Thanks again for the support.


#6

Hi Amanda,

I will throw something into the mix here. I know a few folks with chronic MAV who had a nice long remission after pregnancy. I also know folks who had MAV for the very first time after pregnancy. Take this for what it is.

Life is a struggle, you pick what you want to struggle for. For all you know the kid gives you a better reason to fight this beast more than ever.


#7

I am sorry this probably won’t help you on the baby front right now but because I have a rare form of kidney cancer I have been entered into the 100,000 Genomes Project where they will be able to tell from my DNA which diseases I, and my family are likely to have inherited. It is going to take a few months to be given the results but it will be interesting to find out if VM is amongst them. I will post the answer once I have it but I have no idea when this might be, sorry.

I have three children and three grandchildren and so far none of them have migraine or the dizzies. I wish you all the very best whatever you decide.


#8

Just my tuppence- worth!! In a lot of ways - life is more complicated now days with the level of knowledge available to us - though sadly not enough answers!
I stated with the dizzies around age 20 and by the time I was diagnosed with Meniere’s some 10 years later, I was married with 2 children. Around the same time my Dad - then aged around 60 was diagnosed the same. Although Meniere’s runs a slightly different course to MAV, I have brought up my kids, now in their 40’s and survived. If research/diagnosis is correct I have now, by age 70, entered into bi-lateral Meniers’ plus MAV and heading to total deafness. So far my daughters have not shown any signs actual dizziness, though the elder has recently experienced a retinal migraine like her father gets! We did’nt have the knowledge back then to think about what we might pass on…for which I am grateful!!! As has been said above - there are MANY things you can pass on…some good, some bad - some are an unfortunate mix of 2 sets of genes…at this point there is no guarantee.
Bottom line is : No-body would wish this on their kids…but that alone should not stop you from going ahead if it’s what you want to do. Also - the cure/control might be just around the corner???
The bigger question is how you actually feel about going through with a pregnancy and bringing up a child/children and coping with your condition. As James says - there is, at this point, no known reason for our ‘symptoms’ and a gazillion different names for sets of symptoms which might or might not be hereditary… I realize none of this is an answer…just food for thought.
Good luck with your decision.


#9

It will be very interesting to hear if your results show any links for VM.
Hope you are doing better!!


#10

+1, hope you are recovering well from surgery @Revolving


#11

Ooh! Wonder if VM/MAV would even show up. According to Dr Hain MAV and indeed migraine are ‘committee’ diagnoses, different things to different people, so are they really distinct entities. Maybe time and the Genome Survey will tell. Lets hope they don’t keep you waiting too long for yr results and thanks for offering to share them.


#12

Thank you Beth. I actually have a different sort of tumour on my other kidney now which was a bit of a surprise. Just watching this one, scans aplenty to see if the first one has spread and how fast/slowly this one grows. Nothing like being challenged!!! So to those folk who still like to blame anxiety as a reason for VM I would like to say categorically that is not the case as my VM is still, thank goodness, controlled by meds and I think I have quite a lot of stress!

I hope your hearing aids are working well?


#13

OMW Maggie!! You really are the lady who has everything!!! - just not in a good way. Good that you are now obviously under constant ’ surveillance’ so that they can pick up any new developments and hopefully nip them in the bud (as it were!) I hope yourr tests reveal something useful for you, and we’d all be interested about the VM thing! Sending good vibes!!
As for the stress issue, I totally agree with what Helen (or Dr. Hain) says - that all these diagnoses are diffident things to different people. For me, also, stress has never been a causative factor (only that caused BY the condition!)
The hearing aid in the long-deaf ear sadly caused more problems than it helped. The ‘newly’ deaf one works well at times when my hearing is better…but unfortunately each time the hearing fluctuates, it comes back at different decibels…so it’s a bit of a juggling act to get it right for the time!! :blush: Never-the- less, I’m making the most of the good days - was listening to music while I worked over the weekend - to-day I can barely hear my own voice! Maybe tomorrow will be better :laughing:


#14

That must be very disconcerting indeed! On the plus side you can use it as an excuse to have selective hearing if necessary!!!:yum:


#15

@Laney1 well, I am kinda late here, because this MAV happened to me 4 months postpartum… and yes, it has crossed my mind several times that what if I passed this to my baby. So a couple thoughts:

  1. I can educate him and look for early signs and get him to treatment right away. I hope he is pretty chill out in life, more like his father, and less stress/control freak like me, which does not help.
  2. I think eventually treatments will get better for this, but also lifestyle is important, including a healthier diet and outdoor activities and less screen time.

On the side of taking care of a baby with MAV, I won’t lie, it has been hard, but I did not know what was going on. I am coping much better now and doing as much of the things I thought I would do with him, despite being dizzy. As you already know what this MAV is all about, you won’t be caught off guard. And there is a chance you actually get much better just by the hormonal changes.

Whatever you decide, we will be here to support you.